A blog about Central Pain Syndrome, commonly referrred to as CPS. Written by a patient who has acquired it as the result of a thalamic stroke, it is intended to be a site for discussion of its symptoms, its causes, its horros, its treatments (or lack thereof), and a personal journal of my own attempts to understand and ameliorate a life lived in the constant burning of the fires of Hell.

Traumatic Brain Injury Causes Fatigue

March 7, 2012

As many as 70% of “traumatic brain injury” survivors have trouble with fatigue. Fatigue… what can we do? I am so tired today that it is once again the topic of today’s attention. The three types of fatigue, physical, metal and psychological, all come slithering into the room together, a three-headed python that eats every piece of you. I don’t even have the energy to raise the sword, much less cut off all three heads. I can’t even tell which of my three weary selves it will swallow first,

I was just standing in the kitchen, looking at the few dirty dishes that other people had left in the sink. They needed to be put in the dishwasher. I was so weary… bone tire. It took all my effort to fit them into the almost-full dishwasher, and then add the soap, and then start it.

All I wanted to do was sit down and do nothing, perhaps read some mail. What I really wanted to do was go back to sleep – but how can that be, since I only woke up 3 ½ hours ago, after 9 ½ hours?

It is the pain; it is always the pain. The lists of things that I *must* do keeps bumping me, reminding me of all I am not getting done. Why didn’t the sleep I got last night satisfy me? It was fairly solid. Yesterday I was freezing all day; every time I mentioned it, my husband replied , “It’s not that cold.” Explanations do not work, because the people we CPSers live with are having “normal” reactions to 45 degree weather, or to getting the dishwasher started, or to getting 9 hours of sleep. Even when they say they “get it,” the phenomena of “looking well” makes it easy for them to forget the lessons of our various problems. 82 is “not that hot” to them. 50 is “not that cold. For people with a temperature dysrhythmia, those temperatures are too hot and too cold.He roast, we freeze. Cold is especially difficult for me because it drives up my blood pressure. As the blood vessels contract, blood pressure has to increase in order to keep the same blood volume circulating.

My family gets tired of being reminded about it, as well. They resent that I sit around so much, can’t concentrate on the things that I used to, or get as much accomplished. I’m home all day – why is the house so cluttered? They resent it, too. Why should THEY have to be the ones to do so much work? Why can’t WE take care of some stuff, instead of spending the day sitting around or sleeping? They are angry – angry at the fates, angry that their lives turned out so differently from what they expected, angry that the house is a mess, that we can fly off the handle so easily, and that we are “feeling sorry for ourselves.”

So, yes, brain damage causes fatigue. It also causes depression. It’s on days like these, exhausted and sad and feeling very guilty for having wrecked my family’s life, that I think about how much easier it would be if I weren’t here. If I could support myself, I’d probably be tempted to move out and hire an aide. I would miss them, but could probably still meet them for outings of meals. They could live the way they want, and wouldn’t have me dragging around, or to make them angry.

Is that the solution? Do we all need to live alone, with home aides? Sleeping as much as we want, whenever we want, with no guilt, and spending our days doing whatever we have the energy to to do, instead of what we believe we MUST do, but do not have the energy to do?

Perhaps it’s time for another cup of coffee. Does anyone know if those “5 Hour Energy Shots” work?

The most difficult problem is with the CPSF group. I am stymied as to how to proceed. How I can lead a group of people, all of whom are sick and tired and weary and in pain, to create a 501? If I push ahead and make decisions because no one else is really proposing anything useful, I am a dictator. Last week, I got a mail from a woman I consider a friend of mine – as good a friend as one can be when we’ve never met in person – who said I was being “undemocratic.” Now, she herself is having a terrible time, with doctors who will not prescribe her medicine she needs, painful medical procedures, and financial traumas. But is this process supposed to be democratic? Am I discouraging people by telling them that discussions of ribbon colors and logos are premature, and we need to write a Mission Statement and a Strategic Plan first? When I say things like that, everybody shuts up. So I end up more isolated and weary than ever. We all agree that a CPS Foundation is a great idea. But how do we create it?

Tired … just so tired.

Update – 20 minutes later

Sorting out papers and getting this pile of stuff put away seemed to be a positive task. So I looked for a soundtrack, one I hadn’t heard in a while.

The Smiths’ “Meat Is Murder”” was the wrong choice. It perfectly suited the self-reflective, lugubrious, lonely emotions, and mirrored them so completely as to make it seem that I haven’t moved past 1985 at all, and all the angst of that end-of-my-20s period. I always associate this album with hanging out with the Frog and the Peach crowd after work, and with beautiful, funny, happy, exuberant James, dead too young of AIDS two years or so later. As I listened. I wondered what possessed me to play it.

Then How Soon Is Now began to play, with that glorious Johnny Matt guitar ringing out, and I remembered what makes this album so potent. I hadn’t listened to this song in years. This, time, the closing lyrics were about more than finding romantic love, They were political. But they were also very personal, for all of us CPSers::

You say it’s gonna happen soon

But when exactly do you mean?

You see I’ve already waited too long

And all my hope is gone

Can we create hope out of nothing but fatigue and pain and injury? How do we do that?